Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Thankfully

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Thanksgiving last Thursday was for us, as for so many, a shadow of celebrations past. But it was still lovely and meaningful, in its own way. Our eldest daughter, who also lives here in Massachusetts, was able to join us, even as our youngest had to stay at home out-of-state. Still, we enjoyed an extended family Zoom and watching a movie together-while-apart in the evening. No substitute for in-person, but I’m grateful that we all stayed safe. I cooked a vegetarian, gluten-free feast, with sous chef assistance from our daughter, including this excellent recipe from The New York Times for “Roasted Cauliflower Gratin with Tomatoes and Goat Cheese,” which I highly recommend.

The Times on Thanksgiving also featured a wonderful compilation of reader contributions of six-word gratitudes. Here are ten of my own:

COVID-19 vaccines: Light at tunnel’s end.

All still Corona-free. Knock on wood.

Okay, otherwise, with no digital infections.

Supermarket cashiers risking health for us.

Ample food. Loving family. Roof overhead.

Longer days in just three weeks.

Virtual, imperfect, but meaningful Zoom togetherness.

Good neighbors who wave behind masks.

Local election officials who defend democracy.

You, Dear Reader, for being here.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Adam Nieścioruk

Constancy

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My mother used to have a saying, “This, too, shall pass.” I suppose it calmed me when I was a child, but as a teen and young adult, it used to drive me crazy. As is the way with mothers and daughters, I took this as her default dismissal that she didn’t take my feelings seriously. Looking back, I suspect that on some occasions, she was speaking from the wisdom of experience, and on others, she just couldn’t deal with my angst du jour, legit or not.

Lately, however, those words have resurfaced in my mind’s echo chamber. As the pandemic surges and the infection rate rises exponentially, as our nation roils in the election’s aftermath, I have found some comfort in my mother’s saying. After all, she lived through Weimar Germany and the rise of Hitler, transplantation to a new nation with a different language and culture, World War II, the McCarthy era, the Cuban Missile Crisis, civic disruption in the ’60s, Watergate . . . the list goes on.

We were most fortunate, in the midst of all that 20th century strife, to enjoy a safe and comfortable middle class life. And I am very grateful, now, to have the luxury of being able to reflect on our nation’s turmoil without experiencing a major disruption of illness or unemployment or the risks of financial ruin in my own family. This is not the case for all too many of my fellow citizens, which is both tragic and utterly unacceptable.

Nonetheless, especially when I go outside, I find reassurance in the natural rhythms of the world, that there are constants that continue to ground us all. The trees are mostly bare, now, in my neighborhood, their brown and crumbled leaves raked into huge mounds that line our streets. The air is crisp; the light, November stark. It is a comfort, even as the days grow short again, to know that the earth still spins on its axis and the seasons, albeit altered by a warming planet, still turn.

Last weekend, as we walked the Cape Cod National Seashore, I found peace in the ocean’s crash and susurrus, the crunch of sand beneath my sneakers, a gem of green sea glass. On Saturday night, we returned to the beach and gazed at the stars. There were Orion and Cassiopeia, the star cluster Pleiades in Taurus, and the russet pinpoint of Mars, all where they always are.

There were days in the past week when I was feeling so anxious about the power of false narratives that I wondered if my health would be affected. Then I finally told myself I simply couldn’t keep going down that rabbit hole. So, even as I still doom scroll all too often, I take my walks, and I read about Nature, and I remind myself, even as none of us knows what is on the other side—this, too, shall pass.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Shelby Deeter

Respite

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To say this past week has been intense and stressful would be a vast understatement. We have a new President-Elect, but the months between now and Inauguration Day on January 20, 2021, promise to be a rocky ride. So, as a public service, I offer you some soothing images of our escape to Cape Cod over the weekend. Visiting the ocean and environs always calms my nerves. Hope this virtual visit does the same for you. Enjoy . . .

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Flu Shot

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I got my flu shot last Thursday morning. Unlike previous years, when my health care provider would offer walk-in “flu clinics” that involved checking in, confirming that my doc was part of the practice, then quickly moving through the line to an exam room, getting the shot, and leaving, in Covid Time I had to make an appointment.

I was greeted by a car valet who squeezed sanitizer onto my palm, then the welcome staff who handed me a paper mask (can’t wear your own) with a pair of tongs. After checking in at six feet from the counter, I proceeded to the elevator, where another patient pushed the buttons for me (I would have used my elbow instead), then on to the adult medicine waiting room and took a seat.

To my dismay, I realized I’d left my phone at home—big mistake for waiting rooms—but, fortunately, the nurse came out within a few minutes to invite me to the exam room. The rest went as usual, and I barely felt the shot (unlike a few years ago, when the nurse hit a bone near my shoulder with the needle, big ouch). All done within about the same amount of time as a flu clinic.

Since I’m over 65, I got the super flu shot, and by that afternoon, I was starting to feel a bit out of it. My arm didn’t really hurt, but I was just tired and woozy. Watching the last presidential debate did not help. Sleep was most welcome, and by the next morning, I felt like myself again.

All this made me wonder: how bad is the flu this year? I don’t usually have that kind of a reaction. And, how awful would it be to get it in Covid Time, let alone get Covid? Fortunately, at least as far as the seasonal flu goes, I can just sit back and safely speculate—and urge you, if you haven’t done so already, to get your flu shot now.

We are blessed to have easy access to a flu vaccine. A hundred years ago, people didn’t have that option. The great influenza pandemic of 1918-1920 infected an estimated 500,000,000 people worldwide. Of those, about 50,000,000 died—including 675,000 individuals here in the U.S.

In the past eight months, at least 225,000 Americans have died from COVID-19. According to the best estimates, we won’t have access to a widely distributed vaccine until at least next summer. By that time, if we continue on our current path with mixed response to mask wearing and social distancing, the nonpartisan Institute for Health Metrics and Evaluation at the University of Washington projects that we will have lost nearly 383,500 of our fellow citizens by January 31, 2021. If everyone finally concedes to wear masks, the projection is still very grim, but lower, 321,500 deaths. And if we go the way of easing restrictions, the total jumps to a projected 480,000 dead—well on the way to the death toll of a century ago.

Just writing these numbers is mind-boggling. Covid cases are spiking across the U.S. as I write. In regions that are surging, hospitals are overwhelmed and running out of ICU beds. We are heading into a very dark winter. Even with best practices, because of inconsistent public health practices nationwide, we may well lose another 100,000 fellow citizens in just a few months.

Nonetheless, given that a safe and reliable Covid vaccine is still many months away, if everyone would just wear a mask, we could save about 50,000 American lives between now and February. Think about it. 50,000 lives.

Our national election is truly a life-or-death decision this year. Please wear a mask. Vote safely. Vote.

And when that effective, scientifically-proven Covid vaccine is finally available, get in line. The safety of all depends on each of us.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: “Boston Red Cross volunteers assembled gauze influenza masks for use at hard-hit, Camp Devens in Massachusetts,” 1918, Centers for Disease Control.

Dress Rehearsal

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Last week, we had a Covid scare. Al woke up early Tuesday morning, sick to his stomach, with a fever. This is highly unusual for him. At any other time, I would have just assumed he’d caught a GI bug, but given that COVID-19 can occasionally present with these symptoms, we immediately went on high alert.

I spoke to our clinic twice that morning and was basically advised to have him isolate, hydrate, and take Tylenol to control his fever, which had gone up to 101.1. We have a pulse oximeter that I’d purchased months ago, just in case one of us had Covid symptoms, and I had him check his oxygenation level, which was fine at 98 percent.

I spent the next few hours trying not to freak out. I tried to concentrate on how he was doing as well as my work. A planned Zoom call with one of my clients, who is also a longtime friend, helped me regain some perspective. I dug into my writing, which is a meditation for me. By afternoon, Al was doing better, able to make arrangements for coverage for his social work responsibilities, and his temperature had settled around 99. He was able to drink fluids. And he slept.

But I would be lying if I didn’t admit I was really scared. Both of us are over 65, with health issues that put us at risk for serious Covid complications. I tried to schedule Covid tests for that day, but couldn’t get anything until Wednesday morning. So, like millions of other Americans finding themselves in this terrifying dilemma, we had to just sit tight and wait to see what happened.

By bedtime, Al was looking and feeling a bit better, able to eat a few rice cakes. (I’m a strong believer in the BRAT diet for stomach distress—bananas, rice, applesauce, tea/toast—with rice always the first step.) Just as he was settling down in a separate bedroom, and I was ready to go to bed, I suddenly remembered that the nurse had told me to monitor his oxygenation level. If it dropped below 95, I was supposed to let them know.

So I gave Al the meter for him to measure his levels. I was being very careful not to come into his room, per all the CDC guidelines. Three times he measured his levels with the finger-clip meter on three different fingers, and each time, it came back 88. How could his levels have dropped ten points with no sign of respiratory distress? But I knew this is one of the hallmarks of Covid: your lungs can be overworking before you actually sense it, which is why these readings at home are so important.

After a long discussion with the clinic, I was advised to bring him to the ER. We arrived at Midnight, but, of course, I could not go with him. He texted me as soon as I walked in the house that he was already in a room, and that his pulse/ox was 96 percent. So, obviously our meter was off. I was very relieved, though still confused.

Three hours later, after he’d had a clear lung Xray and other negative lab work, plus a Covid test (results in 48 hours), plus IVs and potassium to replace his lost fluids from the morning, I picked him up and brought him home. His ER doctor did not suspect Covid, which was also a relief. We both went to bed.

A few hours later, I got up and went to a nearby clinic for my own Covid test, just to be on the safe side. It was much easier than expected, a well-organized drive-through tent, and only the base of my nostrils were swabbed, no dreaded brain scrape. Throughout the rest of the day, Al continued to improve, and by evening, his temp was normal.

On Thursday afternoon, we both got our test results back: Negative. Hallelujah!

And what of the mysterious 88 pulse-ox reading? I realized, on Wednesday, that 88 is the default reading on the meter when it’s on but can’t register a measurement. Sure enough, the rubber pad inside the finger clamp had come off, so the meter had broken. If I’d taken the reading myself for Al, I would have known. But at that late hour on the first day, I was way too exhausted to think clearly and figure that out.

In any case, I’m glad he was seen that night, inconvenient as it was, because we found out his lungs were fine. Here’s hoping the copay isn’t outrageous.

Of the many lessons learned, here are my takeaways:

  • There are plenty of viruses out there that are not Covid. We have to be extra vigilant, but each sneeze, cough, or upset stomach may just be routine, rather than exotic and deadly. The biggest red flag last week was Al’s fever. As hours passed, the fact that his temp went down and his appetite returned was a good indication that all he had was a run-of-the-mill virus.
  • I need to get a better pulse oximeter and, if needed, read the results myself if Al is sick.
  • It will take extreme precautions, if one of us gets Covid, God forbid, for the other to be the caretaker and not get sick. I never got Al’s stomach bug, thank goodness, so I must have been doing something right. But there are so many touch points to avoid, so many tiny details to be aware of—how do I wash his dishes v mine? how often should I change gloves? can I safely clean up after him when he’s sick and not contaminate myself without wearing PPE?—that in a house our size, not small, but not huge, either, it will be a real challenge. (All the more so for those who live with multiple family members in small apartments. The whole situation infuriates me, but that’s another post for another time.)
  • It is all the more important for both of us to be extra careful with masks and hand hygiene when out in public. I don’t want to have to go through this for real.
  • I’m very grateful to have Medicare and Medex coverage, and to live in Massachusetts, where we have aggressive contact tracing and plenty of free Covid testing sites. We were told we’d get results in a few days, but actually, we both heard in under 36 hours.

Bottom line: we dodged the bullet. Here’s hoping this was only a dress rehearsal for a play that will never open. Stay well, all.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Gwen O